Friday, April 11, 2008

What does Lupus look like?

Well, that depends.

There were times when I'd lost almost all my hair, had "moonface" and bruises up and down my legs because of the high dose of prednisone I was on, and had lost so much weight I was mere skin and bones. At other times, my face had a healthy glow, I was well-nourished, and I didn't look as though I had a sickly bone in my body. I probably felt worse on those days when my skin was glowing, but that's the tricky part of Lupus. What's happening on the outside may not have any correlation to what's taking place on the inside.

This is a major concern for Lupites - the idea of being sick, but not looking it. Many days, the pain and anguish you're carting around in every joint, muscle, and organ isn't visible to those around you, making it appear that you're not even sick.

I recall one morning at church when I turned to shake hands with a gentleman sitting behind me. I reached out my hand to his, and as he gave me a hearty, welcoming handshake, I instantly burst into tears. It felt as though he had crushed my pained, arthritic hand into a million pieces. I slumped into the pew, just holding my hand, wondering a) was my hand broken (in like, ten million places), and b) how could there be such a disconnect between my healthy, robust, twenty something facade and the delicate, feeble, arthritic-ridden body I possessed? The man was so bewildered and began apologizing profusely, but my husband and I reassured him he'd done nothing wrong.

The other side of the coin can be just as frustrating: undergoing drastic changes in your appearance, but not being able to do anything about it. Lupus patients have been known to gain weight from medicine, or lose weight from loss of appetite. They might have rashes, hives, or acne, and their joints could be red, swollen, and look deformed. They may suffer from hair loss, fingers turning colors in the cold (Raynaud's Phenomenon) or random swelling, called angioedema, in various parts of the body.

Can patients do much to control these symptoms? Not usually.

A friend of my mother-in-law's has Lupus, and after living with it for years, she's resigned herself to having two sets of clothes in her wardrobe. One set is for the months when her disease is active and she's on prednisone, and another is for those times when she's off the medication. It's not worth fighting the inevitable weight gain, she says. Instead, she reminds herself that when she's healthy enough to get the weight off, she will.

Another friend has become somewhat of an expert applying makeup to cover up the butterfly rash that is so typical in Lupus patients. Fed up with the frustration of using standard, over-the-counter solutions, she's spent a little extra time and money to track down the best products available. It's paid off, though. Today, she knows she's doing the best she can to mask her Lupus symptom, and that's consolation enough for her.

What can be learned from these stories? The next time you find yourself judging someone because they're 15, 20, or even 30 pounds overweight, or thinking that the girl next to you in the check out line should really do something about her acne, resist the urge to do so. Instead, give them the benefit of the doubt. They may be deep in the throes of the fight of their life, against a disease that is wreaking havoc in every aspect of their life. Send them a smile instead; they'll have one less judgement to contend with, and so will you.

BUY THE BOOK

Sara Gorman

In 2001, I was diagnosed with systemic lupus, at the age of 26. I had been married less than 6 weeks and was at a highpoint in my career in television production. While I fought to keep hold of the life I'd known - demanding, yet fulfilling career, busy social life, packed vacation schedule - after four years of running my body into the ground, I realized I was fighting life, not living it. Thus, I downshifted almost every aspect of my life. I let go of my career and made it my number one priority to get myself back in good health. I'm proud to say that I've reached my goal, but work each day to maintain that healthy lifestyle. despite lupus. My book details the steps it took to reach that goal. A native of Indiana and graduate of the University of Notre Dame, I reside in Alexandria, Virginia with my husband, two young daughters, and pug dog.